Crohn's Disease diagnosed my 8 year old

by Tamara

My 8-year-old son was just diagnosed with mild Crohn's disease. He has the type that has no stomach cramping and diarrhea but perianal disease with constipation, fistulas, fissures. No Celiac. His colonoscopy and endoscopy shows mild Crohn's symptoms in his intestines, but moderate perianal disease. The doctor's first choice is to put him on Remicaid, but after researching, my husband and I are unsure that's the way to go since it's so harsh. Has anyone had or heard of a child this age going through this kind of treatment? We are leaning toward asking the doctor to not take a top down approach, but maybe a step up approach. He hasn't tried any meds yet for him so we're not sure why such a strong med first. Any advice would be so much appreciated. We feel kind of lost at this point. Thank you.

Comments for Crohn's Disease diagnosed my 8 year old

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Education NEW
by: Anonymous

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Crohn's Disease diagnosed my 8 year old NEW
by: Lydia D.

Be aware that I have no children, but have Crohn's. I also know that dealing with the doctors can be an absolute nightmare because they do not have the time to adequately explain everything in a language, which is comprehensible for the layperson.

In Japan they withdraw food from a child and feed them an elemental diet via a nasal tube. This has almost immediate benefits and can lead to remission in a few months. However, the Crohn's generally flares up again when the nasal tube feeding is stopped. It is not practised outside of Japan to any great extent.

You can buy astronaut drinks, such as Boost, Ensure, Fortisip, Fresubin, etc. These must be sipped alternately with water throughout the day.

I suggest that you get hold of the paediatric clinical practice guidelines for the treatment of inflammatory bowel disease in your country (Google). There should also be guidelines for treating with alpha-TNF inhibitors.

I have found the UK paediatric guidelines: http://journals.lww.com/jpgn/Fulltext/2010/02001/Guidelines_for_the_Management_of_Inflammatory.1.aspx

What are the guidelines for using biologics in pediatric patients? (USA)
http://onlinelibrary.wiley.com/doi/10.1002/ibd.20653/full

If the disease is mild, then I agree that Remicade is a very high-powered medication. However, your doctor is trying to do you a short-term favour. Treating children with steroids (the usual route) causes stunting of growth that is impossible to reverse. This can affect job prospects, fertility, etc., in the future.

The problem is that the alpha-TNF inhibitors are the end of the road - there are no other stronger treatments out there at the moment. Not only that they can cause severe side-effects - a friend of mine has early dementia through demyelination by an alpha-TNF inhibitor. Some patients have gone blind and deaf. These are very rare side-effects at the moment.

Side-effects of medication: www.drugs.com www.rxlist.com

(...continued)
Crohn's Disease diagnosed my 8 year old NEW
by: Lydia D.

I am not a doctor, but I would suggest trying Pentasa at first and Pentasa or Asacol enemas. If no improvement was sees after a month or so, I would combine this with Entocort (aka Budesonide) - also the corresponding enemas. The latter is a steroid, but with fewer side-effects than Prednisolone). If, after a further month or two, symptoms were still present I would start the patient on a cytostatic such as 6-Mercaptopurine (long-term chemotherapy) and lower the steroid dose gradually over 3-6 months.

However, if there are paediatric clinical guidelines in the USA (I fear that there are none - use the UK guidelines if they have any), you should obtain better information from them.

Perhaps your local Crohn's association has some paediatric information:
http://www.ccfa.org/printview?pageUrl=/about/global_partners

Keep a patient food/mood/symptoms/medication diary. I refer you to the following:
http://beyondibd.com/blog/treatment/how-keeping-a-diary-can-improve-your-health/

Try and quantify the disease using the following scales:

CDAI
http://www.ibdjohn.com/cdai/

Bristol Stool Scale
http://en.wikipedia.org/wiki/Bristol_Stool_Scale

The comparative pain scale (no pain 0, 10 excrutiating pain)
http://www.tipna.org/info/documents/ComparativePainScale.htm

For a child you can use a pictorial pain scale: http://www.practicalpainmanagement.com/resources/diagnostic-tests/assessing-pain-pediatric-patient-emergency-setting

More useful references

Very good short description of Crohn's.
http://www.crohns.org/congress/submission00/appendix4.htm

Comic - Everything you never wanted to know about Crohn's disease
http://ventedspleen.com/blog/2007/10/22/24-hour-comic-everything-you-never-wanted-to-know-about-crohns-disease/

What is Crohn's Disease?
http://www.crohns.org/congress/submission01/appiv.htm

Crohn's Disease
http://www.mayoclinic.com/health/crohns-disease/DS00104

Crohn's Complications
http://www.umm.edu/patiented/articles/how_serious_crohns_disease_000103_4.htm
http://www.umm.edu/altmed/articles/crohns-disease-000043.htm

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